2003-May Readers Digest, US edition

TO
LIVE OR TO DIE

Should terminal patients have the right to end their lives painlessly? An Oregon
lawsuit has implications for us all.

By Mary A Fischer

JIM ROMNEY often thinks about how he'll spend his last moments of life. On a
spring day in 2002, the 57~year~old former high school principal did just that
while sitting with his nephew in a drift boat on Oregon's Sandy River. When
a 20~pound chinook salmon snagged his fishing line, he declared: "Oh, man,
if I could just have a heart attack right now, I couldn't be happier. What a
way to go!"

Romney
isn't a morbid person - on the contrary. "I love life so much," he
often tells friends and family. But he is realistic. Once a vibrant, active
man who 1oved to golf, sky-dive and water-ski, he has become progressively weaker
since being diagnosed in June 2001 with the incurable disease amyotrophic lateral
sclerosis (ALS, commonly known as the Lou Gehrig's disease). Within months of
the Sandy River fishing trip, he was having difficulty walking and holding up
his head. By last summer, his hands were twisted and his speech was slurred.

In
late August of last year, when his condition deteriorated further, Romney confirmed
that he was about to receive a lethal dose of barbiturates to end his life at
the time of his choosing. In Oregon, under the state's Death with Dignity Act,
that meant that doctors had already determined he had a terminal illness and
had roughly six months left to live. "I hope not to exercise that option,"
he said in August. "but I want to have control over when I die because
the symptoms of ALS make dying with dignity difficult."

The
Death with Dignity Act, which for the first time legalized physician-assisted
suicide (PAS) in the United States, went into effect in Oregon in 1997. If two
physicians certify that the person has less than six months to live, a mentally
competent, terminally ill adult Oregon resident can request medicine to assist
in dying. Since the law was enacted, about 25 Oregonians a year, most of them
terminal cancer patients, have taken prescribed barbiturate overdoses to hasten
their deaths.

But
such statutes on physician-assisted suicide remain highly controversial. Since
November 2001, U.S. Attorney General John Ashcroft has battled the Oregon law,
taking steps to nullify it in hopes of setting a national precedent on PAS.
Last April, Ashcroft lost the first round in Oregon's federal district court,
leaving the law in effect, but the matter could make its way to the U.S. Supreme
Court.

The
debate over assisted suicide touches nearly every hot button there is - religion,
economics and the government's right to regulate individual choices. The Oregon
law, its proponents say, is working exactly as intended, They insist that assisted
suicide for the terminally ill is a social movement whose time has come. At
the heart of their argument are issues about quality of life and the rights
of individuals to control their own bodies - and their own destinies.

Critics
maintain that assisted suicide is never appropriate and can never be properly
regulated because of its subjective standards, which give too much discretionary
power to doctors. They predict scenarios in which the aged or infirm will feel
obligated to end their lives to spare their families undue emotional and financial
hardship, and say the law could be used not only to manage symptoms, but to
cut medical costs as well.

ON
NOVEMBER 4,1997, Jim Romney went to the polls near his home in Tualatin and
voted for the Death with Dignity Act, never imagining he would become one ot
its most visible champions. Despite his conservative Mormon upbringing, he says.
"Just like abortion, this is an individual's choice, and no one has the
right to take that awav from vou." He didn't have to look far for an opponent.
His Lutheran wife, Kathy, an elementary school teacher was against the law.
"It's my Christian background that says death should be left in God's hands,"
she says. Married for 22 years, the Romneys say that few other pleasures compare
to back-yard barbecues with their four grown children, two grandchildren and
Bailey, their golden retriever.

But
their idylic life shattered when Romney was diagnosed with ALS and received
the prognosis that he would eventually lose control over his muscles and bodily
functions while his mind remains intact. "I told him I'd take good care
of him," Kathy explains but her husband had other plans.

"I
know Kathy loves me, but I couldn't imagine having her take care of me to the
point of cleaning me after I've fouled myself," Romney says. "As much
as I don't want to go through this myself, I don't want to put her through it."
So Romney turned to the Compassion in Dying Federation, a leading pro-PAS organization,
which educates patients about end-of-life choices and makes hospice and physician
referrals.

MARY MORRISON, a cancer patient who died in February, considered the assisted-suicide
option but made a different decision. When she first heard about the Oregon
law, the former manager of computer field engineers was 55, in good health,
and living in California. 'I thought it sounded like a good thing," she
said. Even though Morrison, like Jim Romney, bad been raised as a Mormon, she
said her religious beliefs did not influence her initial reaction.

But
after being diagnosed with lung cancer nearly two years ago, she reconsidered.
Divorced since 1969, she moved to Portland after learning of her cancer to be
close to her only son. Then, in March 2002, Morrison learned the disease had
spread to her brain. Doctors estimated she had six months. Still, she opted
not to request life-ending medication for moral as well as practical reasons.
"Life is too short as it is" she said. "If you have a choice.
then you should live. Every moment is precious." Morrison's objection to
the law was also based on fear. "My son told me one of the risks of the
law is the medication might not work, and I could be left a vegetable."

NOT
TRUE, says George Eighmey, executive director of Compassion
in Dying of Oregon. The only risk from the medication is that you die."
(The prescribed 9 grams of a short-acting barbiturate has uniformly resulted
in death.) He says Morrison's fear is one of several misconceptions about the
law. Another was that once the statute legalizing PAS passed, the flood gates
would open. Hundreds of terminally ill people would kill themselves. "That
never happened," says Compassion president Barbara
Coornbs Lee. Oregon Public Health Services statistics for 1998 show that
24 Oregonians received medication, and 16 took it. Most of the others died from
their illness. The numbers more than doubled in 2002: 58 received medication
and 38 actually took it.

Critics
also predicted that poorly educated patients, underclass minorities, and those
without financial support would feel pressure to choose PAS. "In our experience,
none of those things have materialized." says Lee. Oregon Public Health
Services records show most patients who avail themselves of the drugs are like
Jim Romney: Caucasian, middle-class, educated professionals. Patients with a
college degree were about three times more likely to participate than those
who never finished high school.

THE
OFFICE of Dr. Greg Haimilton, a well-known Portland psychiatrist, is only four
blocks from Compassion in Dying headquarters, but he couldn't be farther from
the organization philosophically. "The whole thing is a scam," he
says.

"Terminally
ill people have been made to think their lives are not as worth living as other
people's. You don't tell somebody who is discouraged and frightened that the
answer to their fears is to take an overdose, but that's what's happening here"

Hamilton
heads Physicians for Compassionate Care, an organization of 2,000 doctors and
health care providers who are opposed to assisted suicide. "Advocates of
the law are using the fear of pain as part of their political agenda, and they're
frightening people into thinking they need assisted and they don't" he
says. "Pain is not the issue anymore. The main factor is depression, and
if we aggressively treat depression through medication and counseling the desire
for death would diminish."

AT
LEAST ONE outcome of Oregon's law isundisputed. "It was a wake-up call
to the medical community that has led to significant changes in pain management
and end-of-life care," says James L. Werth, Jr., assistant professor of
psychology at the University of Akron, who has counseled dying AIDS patients.
"People can get adequate treatment for pain and discomfort."

Another
outcome has been expanded hospice care. Statistics from the 1999 Dartmouth Atlas
of Health Care showed that while most Americans still die in hospitals, in Oregon,
over half die at home or in a hospice.

Assessing
a person's mental fitness to commit suicide poses a dilemma for doctors participating
in PAS. In medical school, says Dr. Peter Rasmussen, a Salem, Ore., oncologist,
"we were taught that anyone who wanted to kill themselves was mentally
ill and we were sworn to keep them from doing it," Ten years ago, Rasmussen
considered suicide "a sinful. cowardly act," he says, but his opinion
has changed, and he has helped several of his terminal patients end their lives.

"My
opinion has matured from long deep discussions with many colleagues and patients
about the meaning and value of life," he says. "All thoose who took
the medication were formerly independent adults who suddenly became dependent
and lost the ability to enjoy their lives."

IN
MAY 2002, Jim Romney was still able to sit upright at his dining room table,
and though he spoke slowly to regulate his breath, his voice boomed at Hamilton's
suggestion that depression may have impaired his judgment. "I am not depressed."
he says. Sure I was very sad when I first learned I had ALS, but I look forward
to every day.

Romney
may be an exception, meaning he is an ideal PAS case, opponents of the law concede.
But in reality, they say, most cases of assisted suicide betray troubling issues
of family and financial pressure. Ethicist and co-founder of the Hastings Center
in New York, Daniel Callahan contends, "The belief that assisted suicide
can be safely regulated is a myth. The confidentiality of the doctor patient
relationship make it impossible to provide adequate oversight."

Callahan
insists it's a slippery slope from physician asssisted suicide to abuses in
doctors discretion. Just look at the Netherlands he says. There PAS and euthanasia
have been acccepted practices since the 1980, and 3,300 people do it every year.
But critics in the United States say that a lack of systematic official oversight
invites abuse. In about a third at the Netherlands cases, for example, terminally
ill patients judged by their doctors not to be mentally competent were nonetheless
administered lethal medication without their permission.

In
Oregon, critics of the law say the case of Kate Cheney illustrates the pressures
inherent in most patients' decisions. At 85, Cheney with terminal stomach cancer,
knew the end of her life was near. She asked a doctor at Kaiser Permanente in
northwest Oregon for a prescription to kill herself. Her daughter, a former
nurse who had come from Arizona to assist her mother, thought the initial doctor
who said Cheney appeared to be suffering from dementia was "dismissive"
of her mother's request. She asked for the opinion of a second doctor, who then
arranged for psychiatric evaluation.

The
results showed that Cheney lacked "the very high level of capacity"
required to weigh her end of life options, and lethal drugs were again denied.
At that point, Cheney's daughter "became very angry," the psychiatrists
report indicated, and PAS critics who know the case said she then "shopped"
for a new doctor who would say yes. Kaiser's administrators ordered a second
assessment, which found Cheney was capable of making such a decision. A month
later, at home and surrounded by her family, Cheney took the medication and
died.

"Advocates
of the law say assisted suicide is about individual rights," Dr. Hamilton
says, "but when you get right down to it, assisted suicide does not take
place in a vacuum. It involves families, doctors, sometimes HMOs, which means
it involves outside pressures, including financial pressure."

Dr.
Robert Richardson, who heads Kaiser's Ethics Services and oversaw Cheney's case,
says, "This was not a daughter-directed decision. It was Kate's decision.
I spent time with her and clarified this for myself. I can also tell you that
assisted suicide does not save money."

The
concern that managed-care professionals might recommend assisted suicide as
a means to save on medical costs was investigated in a study published in the
July 1998 New England Journal of Medicine. This study looked at the proportion
of medical costs that might be saved by measuring the amount of time a patient's
life might be shortened if the PAS option was exercised. Relying on statistics
from the Netherlands (the only place where enough time had passed to look at
cases in a measurable way), the New England Journal of Medicine study concluded
that approximately 62,000 patients would choose PAS each year in the United
States were it legalized nationwide. The study estimated that most patients
would forgo an average of four weeks of life, which translated to a small savings
of $10,118 (in 1995 dollars), or approximately .07 percent of all health care
costs.

IN
1997, THE US SUPREME COURT ruled there was no constitutional right to physician-assisted
suicide, but permitted each state to decide whether to legalize it. That decision
paved the way for Oregon's Death with Dignity Act. But in 2001 Attorney General
Ashcroft argued that the hill violated the DEA's Controlled Substances Act,
which allows doctors to prescribe drugs only for "legitimate medical purposes."

The
state of Oregon sued to block Ashcroft's directive, claiming this was a state
matter in which Washington had no jurisdiction and Jim Romney volunteered to
be one of the suit's plaintiffs. In written declarations filed in Oregon's federal
court, Romney and other patients and family members told their emotional stories.
One mother recounted how her 26-year-old daughter begged her to kill her when
the pain of her bone cancer became unbearable. Marcia Angell, a lecturer in
social medicine at Harvard Medical School, told 1988 how her 81-year-old father
took a pistol from his bedside table and shot himself. Diagnosed seven years
earlier, prostate cancer had spread throughout his body and he had excruciating
back pain. "He knew he had nothing to look forward to except further decline
and a protracted death," Angell says. "Had PAS been available to my
father, I have no doubt he would have chosen a less violent, lonely death."
Critics of the law might add that if effective pain management had been available
to Angell's father, he might have chosen to live.
On April 17, 2002, Judge Robert F. Jones ruled
in favor of the Oregon plaintiffs. but six weeks later, Ashcroft filed an appeal.
A hearing in the 9th Circuit Court of Appeals will take place this month. The
loser will likely appeal, which could again put the issue before the U.S. Supreme
Court.

SINCE
2001, Rhode Island, Wisconsin and New York have introduced assisted-suicide
bills in their state legislatures but none have passed. Hawaii and Arizona have
bills pending. Vermont has two bills - one that would legalize PAS, and another
that would outlaw it. So far "the issue has been defeated in every place
it's come up and the movement is on the ropes." says Dr. Greg Hamilton.

Compassion's
Barbara Coombs Lee disagrees : "I have no doubt that after I'm gone,
we'll look back at this whole debate and see this was a movement whose time
had come."

But
even without assisted-suicide laws in place, says Akron psychologist James Werth,
"Everybody knows it happens with a wink and a nod."